Anticipated suicidal and death ideation in response to an imagined dementia diagnosis: A qualitative study

Alzheimer’s disease and related dementias are prevalent, highly impactful, and feared diagnoses. A mixed methods study using semi-structured interviews was conducted to clarify causes of dementia-related anxiety. Fifty community-dwelling adults aged 58 to 89 (M = 70.92, SD = 6.08) were recruited from a university participant registry and Memory Clinic; none had dementia diagnoses. Analyses revealed that 42% (n = 21) of participants anticipated suicidal or death ideation if diagnosed with dementia. Among participants endorsing anticipated suicidal or death ideation, responses ranged from active, specific plans, including interest in physician-assisted suicide, to more passive wishes to hasten death rather than continue to live with dementia. Within reports of both anticipated suicidal and death ideation, three subthemes emerged. Participants reported concerns about becoming a burden to others, the devaluation of life/loss of self with dementia, and the desire for (and anticipated thwarting of) personal control as factors contributing to their anticipated responses to a dementia diagnosis. Statements of anticipated suicidal and death ideation were contingent on a dementia diagnosis and may reflect errors in affective forecasting. Nevertheless, given the prevalence of dementias and older adults’ elevated rates of suicide, the intersection of these two public health issues warrants greater attention.


Introduction
Alzheimer's disease and related dementias (ADRD) have the capacity to significantly interfere with functioning and independence, particularly in moderate and advanced stages (Alzheimer's Association, 2021). Perhaps because of their progressive nature, impact on functioning, and lack of cures, ADRD are feared diagnoses (Awang et al., 2018;MetLife Foundation, 2011). For some, the mere idea of developing ADRD is a frightening prospect. Dementia-related anxiety is anxiety about a current or potential future diagnosis of ADRD and related symptoms, and dementiarelated anxiety may range from momentary concerns to ongoing preoccupation (for a conceptual overview, see Kessler et al., 2012; for a scoping review, see Werner et al., 2021). Dementia-related anxiety can occur regardless of age or cognitive status, though it does appear to peak in late midlife (Roberts et al., 2023) to early older adulthood (Bowen et al., 2019), when signs of slowed processing speed and forgetfulness are increasingly noticeable (e.g., Salthouse, 2004). Dementia-related anxiety is associated with psychological symptoms, such as general anxiety (French et al., 2012;Fresson et al., 2017) and depression (Cui et al., 2020;Kinzer & Suhr, 2016). Additionally, adults acknowledging suicidal ideation reported greater dementia-related anxiety compared to adults without suicidal ideation (Cui et al., 2020).
We conducted a mixed methods study including semi-structured interviews focused on knowledge about and exposure to ADRD to better understand factors contributing to dementiarelated anxiety among middle-aged and older adults without dementia diagnoses. Although broad in our original intent, participants' responses to an imagined dementia diagnosis revealed several references to anticipated suicidal ideation and the preference for death over living with dementia. Both ADRD and suicide are public health concerns for older adults, as age is the greatest risk factor for ADRD (Alzheimer's Association, 2021) and individuals aged 65 and older have some of the highest suicide rates in the United States, particularly among older men (Drapeau & McIntosh, 2020). Thus, the present project focuses on anticipated suicidal and death ideation in response to a hypothetical dementia diagnosis and examination of reasons why individuals anticipated this response.
Perhaps because patients express anxiety that increasing forgetfulness may be signs of AD, providers are sometimes concerned about their patients' emotional reactions to ADRD diagnoses. In an early study of general practitioners, 17.1% "very rarely" and 2.5% "never" informed their patients of a dementia diagnosis. In this same survey, 31% of respondents cited their perception of patients' emotional stability as an influence in their decision whether to disclose a dementia diagnosis (Vassilas & Donaldson, 1998). A national survey in Belgium indicated that the majority of physicians (68.0%) reported always disclosing the diagnosis to patients; though only 7.0% of physicians reported not disclosing to patients, one of the most common reasons given for their reluctance to reveal the diagnosis related to concerns that the diagnosis would cause depression (Tarek et al., 2009). Similarly, a qualitative study of primary care physicians in Japan indicated that concern about patients' emotional reactions was a common reason given among those less comfortable with disclosing a dementia diagnosis (Abe et al., 2019). Carpenter and colleagues (2008) reported that most patients do not display highly emotional reactions at the point of diagnosis (or during a follow-up call days later) and that anxiety and depression after a diagnosis of mild cognitive impairment (MCI) or Alzheimer's disease (AD) remain stable or decline.
The literature on suicidal ideation and death by suicide among people living with dementia is complex. Recent research suggests that people living with dementia are at increased risk for suicidal ideation and hospitalizations for suicidal-behavior (Alipour-Haris et al., 2022), and high rates of psychiatric diagnoses co-occurring with ADRD likely contribute to greater risk for suicidal ideation and behavior (Lai et al., 2018). Considering death by suicide, a narrative review concluded that dementia diagnosis does not contribute to higher rates of suicide overall, but that there may be risks in particularly vulnerable individuals or early in the course of dementia (Draper, 2015). A long-term study in Denmark suggests that suicide risk appears to decline over time since diagnosis (Erlangsen et al., 2020). Studies focusing on death by suicide suggest that risk is elevated in the early stages of ADRD (Erlangsen et al., 2008) and soon after diagnosis (Schmutte et al., 2022). Known factors contributing to increased risk of suicide include diagnosis during hospitalization (Erlangsen et al., 2008), being between 65 and 74 years old and in the first 90 days after diagnosis (Schmutte et al., 2022). A population-based study in England similarly found increased risk for suicide during the first 3 months after dementia diagnosis; further, individuals with psychiatric comorbidities and those younger than 65 years old at the time of diagnosis were also at greater risk for suicide (Alothman et al., 2022). In Korea, a study revealed that people living with dementia and mental health diagnoses had higher rates of death by suicide compared to both (1) people living with dementia and without mental health diagnoses and (2) those without ADRD; however, people living with dementia and without mental health diagnoses remained at greater risk for death by suicide compared to those without ADRD (Choi et al., 2021).
Dementia type also appears to be related to suicidal behavior and risk for death by suicide. Among U.S. Veterans with dementia, prevalence of suicidal behavior differed by dementia type, with lowest prevalence for those with Alzheimer's disease and highest prevalence for those with frontotemporal dementia (Lai et al., 2018). In a nationwide sample of individuals with dementia who were recently hospitalized, those hospitalized following suicidal behavior more commonly had been diagnosed with frontotemporal type compared to Alzheimer's (Alipour-Haris et al., 2022). Frontotemporal type was also associated with greatest risk for death by suicide among adults aged 65 and older within 12 months of diagnosis (Schmutte et al., 2022).
In an effort to anticipate risk for suicidal ideation and behavior at or after diagnosis, it is informative to consider people's expected responses to ADRD risk among individuals without a current diagnosis. For example, genetic testing for presence of the APOE4 allele (associated with elevated AD risk; Farrer et al., 1997) is widely available. In a longitudinal study, participants were asked to indicate their interest in knowing whether they have high risk for ADRD via testing for genetic predisposition or biomarkers; 81.0% of respondents expressed interest in knowing their risk, and 6.6% of respondents indicated that they would seriously consider suicide if testing revealed they were high risk (Caselli et al., 2015). Notably, self-reported depression, anxiety, personality, and cognitive functioning did not differ between those who did and did not anticipate consideration of suicide in response to determination of high ADRD risk, highlighting the challenge of how to best identify individuals at risk for self-harm. The only identified group difference included individuals who anticipated feeling suicidal also reported lower perceived social connectedness. In a small sample of individuals with family histories of AD or frontotemporal dementia, cognitively healthy participants who were identified as "at risk" for dementia based on genetic testing did not report negative psychological consequences as a result of receiving their test results, and qualitative findings suggested an increased orientation to planning for the future (Galluzzi et al., 2022). The different findings between two studies appears to illustrate the difficulty of predicting emotional responses to high impact events, also known as affective forecasting (Wilson & Gilbert, 2005). Caselli et al. found a proportion of people anticipated suicidal ideation if they found out they were at high risk; however, among individuals actually informed of their risk, Galluzzi et al. reported few negative consequences.
Taken together, ADRD are feared (MetLife, 2011) and highly impactful diagnoses (Alzheimer's Association, 2021), and some providers worry about their patients' ability to cope with the diagnosis (Johnson et al., 2000;Vassilas & Donaldson, 1998). There is evidence for increased risk for suicidal ideation and attempts (Alipour-Haris et al., 2022) and death by suicide in early stages of dementia (Choi et al., 2021;Schmutte et al., 2022). Less is known about how the diagnostic process itself affects psychological well-being, though one review of studies assessing the transition from reporting cognitive difficulties to receiving a dementia diagnosis suggests that there may be initial distress, but the negative effects are not long-term (Robinson et al., 2011). Understanding anticipated responses to a hypothetical diagnostic experience may shed light on dementia-related anxiety in general and inform providers about important differences between imagined and actual experiences. In a mixed methods study intended to increase understanding of dementia-related anxiety, middleaged and older adults were asked open-ended questions assessing their knowledge about ADRD and how they believed they personally would respond to a diagnosis of ADRD. The present findings focus on anticipated suicidal and death ideation if diagnosed with ADRD, as well as some of the reasons for anticipating that they would no longer want to live if diagnosed with ADRD.

Method
The data presented here are part of a larger study including semi-structured interviews and a questionnaire assessing people's thoughts, feelings, and reactions regarding ADRD, including anticipated responses to a dementia diagnosis. 50 participants were recruited from a Memory Clinic at a University-based clinic (n = 25) or from a participant registry (n = 25). No participants dropped out of the study. Data collection for the study occurred between November 2018 and June 2019. Details of the larger study are described elsewhere .

Procedure
Procedures were approved by the Institutional Review Boards (IRB) where data were collected (University of Colorado Colorado Springs IRB #19-001) and analyzed (Arizona State University IRB STUDY00011362). Clients of a University-based Memory Clinic (including a brief, nondiagnostic evaluation of cognitive functioning) with profiles deemed to be representative of "normal age-related cognitive change" were invited to participate in the study after their appointment ended. Those interested in the study provided permission to be contacted by phone to schedule individual appointments, interviewers had no previous contact with participants. Individuals from the participant registry were contacted by phone or email to assess initial interest in the study; those expressing interest in participation were contacted directly to schedule an appointment.
Participants were informed the study would involve a recorded interview and completion of questionnaires estimated to take 60-75 min, and that they would receive $20 in compensation.
Two researchers (MM and LL) scheduled and interviewed all participants. Participation took place in individual testing rooms at the University Gerontology Center; only the researcher and the participant were present at time of the interview. During the consent process, procedures were reviewed and participants were reminded that interviews would be recorded for transcription purposes. The interviewers introduced themselves and their roles in the study. The study began after reviewing the study purpose and procedure and signing the informed consent form. Order of completion for the interview and questionnaire was counterbalanced. After completing the study, participants were debriefed and provided compensation.

Semi-structured Interview
Interviews began with a scripted introduction, "We are interested in gaining an understanding of people's knowledge of and feelings about Alzheimer's disease and other types of dementia. To begin, have you heard of Alzheimer's disease or other dementias? What do you know about them?" All participants had heard of ADRD. Participants' descriptions of their knowledge varied in length and content but often included examples from their personal lives (e.g., friends, neighbors, and parents). Interviewers used prompts, such as "tell me more about _____" to increase clarity, as needed. See Supplemental File 1 for a complete list of interview questions. If participants addressed the content of a question intended to be asked later, conversation was allowed to unfold naturally, rather than ask the participant to wait until later to discuss an issue. This approach created a more conversational flow but did result in some variation in the order questions were asked. Most of the responses presented here were in response to the specific inquiry: "Imagine for a moment the possibility of getting Alzheimer's disease or another form of dementia yourself. What are your thoughts and feelings?" No field notes were taken during the interviews to allow the interviewer to remain focused on the participant. Interviews were transcribed by one of four research assistants and double-checked for accuracy by one of two research assistants. Transcripts were nearly verbatim; however, approximately midway through data collection, it was discovered that the recording equipment lagged between pressing the "Record" button and the actual recording process. As a result, some interviews began abruptly and resulted in missing introductory comments. No repeat interviews were conducted. Although the findings presented are in the manner that participants described them, there were no member checking opportunities for participants.

Qualitative Analysis
For the purposes of this paper, we engaged in a qualitative content analysis to reveal, from both manifest and latent perspectives, how participants described suicide and death ideation in response to a hypothetical dementia diagnosis (Graneheim et al., 2017;Hsieh & Shannon, 2005;Krippendorff, 2018). Two individuals (MM and a research assistant, TK) began by reading all 50 transcripts and familiarizing themselves with the data and then engaged in a manifest content analysis. The transcripts were examined in entirety for text elements that exist, without interpretation, and focused on discussions of suicide, death, die, pass away, kill or anything related to discussion of end-of-life. Both coders recorded quotes about death, dying, or end-of-life in separate Excel sheets. The two coders then met to review each participant, presence or absence of related content, and specific quotes to further reduce chances of missing related content. We then conducted a latent analysis by grouping quotes broadly into categories that focused on both anticipated suicidal and death ideation, we recontextualized the data and began analyzing data for patterns. This involved some interpretation to note potential similarities or differences in motivations for statements conveying either anticipated suicidal ideation or anticipated death ideation. Within these two categories, we observed basic declarations of intention and more detailed statements reflecting concerns about burdening others with care needs, general devaluation of life or self with dementia, and worry about losing control (or the desire to maintain control). These three subthemes emerged for responses conveying both anticipated suicidal and death ideation.

Quantitative Analyses
The current study also used basic quantitative analyses to examine characteristics associated those who did or did not anticipate suicidal or death ideation in response to a hypothetical dementia diagnosis. Chi-square tests were used to examine group differences on categorical variables, and analysis of variance (ANOVA) was used to examine group differences on continuous variables.

Questionnaire Packet
Participants completed questionnaires in a private room; this portion took between 15 and 20 min. Measures examined in the present study are briefly described. All measures are described in greater detail in Supplemental File 2.
Dementia-Related Anxiety. The 12-item modified Dementia Worry Scale (DWS; Roberts & Maxfield, 2021) assesses participants' level of concern about developing Alzheimer's disease and other forms of dementia. The measure uses a 1 to 5 point scale. Higher sum scores indicate greater dementiarelated anxiety.
Self-Perceived ADRD Risk. A single item assessed self-perceived ADRD risk. Participants indicated perceived risk on a scale of 1 (no risk at all) to 5 (very high risk).
ADRD Exposure. Participants were asked to respond to five yes/no questions about exposure to ADRD, based on a similar version by Kinzer and Suhr (2016). Participants were coded as having genetic exposure (first degree relative with ADRD), non-genetic exposure (distant relative with ADRD, ADRD caregiving experience, etc.), or no exposure. Participants who reported both genetic and non-genetic exposure were included in the genetic exposure group.
Anticipated ADRD Stigma. The 7-item anticipated cost of stigma scale (Sirey et al., 2014) originally designed to assess anticipated social stigma associated with depression was adapted to assess anticipated stigma of an ADRD diagnosis. Participants indicated agreement with each statement on a 1 to 4 point scale; higher mean scores indicate greater anticipated ADRD stigma.
Alzheimer's Disease Knowledge Scale. This 30-item true/false scale (Carpenter et al., 2009), assesses objective knowledge about AD. Responses were scored as correct (1 point) or incorrect (0 points). Higher sum scores indicate greater knowledge about AD.
Demographic Information. Participants provided basic demographic information, including age, gender, race and ethnicity, years of education, relationship status, income level, self-perceived health, and religiosity.

Participant Safety
Because of the study topic, researchers were prepared with referral information for neuropsychological assessment and psychotherapy services. We did not anticipate the number of people who would mention the possibility of wanting their lives to end (or wanting to end their lives) if diagnosed with ADRD. The two interviewers were clinicians (one a licensed psychologist, and one in training) and were able to assess and confirm participant safety. Because participants did not have ADRD and mentioned passive or active thoughts of harming themselves in specific reference to an imagined diagnosis, it was determined they were not at immediate risk. Several participants who expressed anticipatory suicidal ideation reported current participation in mental health treatment (medication and/or psychotherapy) and were encouraged to share thoughts of suicidal and death ideation with mental health providers if they became more frequent/intense, if they began to consider self-harm outside the imagined situation, and/or if they began to exhibit cognitive difficulties.

Findings
Of 50 participants, 26 (52.0%) did not mention anticipated suicidal or death ideation in reference to dementia, three (6.0%) mentioned suicidal or death ideation but only to indicate they did not anticipate such a response to a dementia diagnosis, seven (14.0%) anticipated suicidal ideation if diagnosed with dementia, and another 14 (28.0%) anticipated the desire to hasten death, or death ideation, if diagnosed with dementia. Three participants made statements suggesting both suicidal and death ideation if diagnosed with dementia. These three individuals were included within the category of anticipated suicidal ideation, given the seriousness and proactive nature of suicidal ideation compared to death ideation.
See Table 1 for general participant information.

Absence, Questioning and Denial of Anticipated suicidal and Death Ideation
Twenty six participants (52.0%) did not mention anticipated suicidal or death ideation at any point. Three additional participants (6.0%) mentioned suicide, without anticipating it themselves. One of these three individuals questioned whether she would be suicidal. As a caregiver for her mother living with dementia, she acknowledged her fear about the uncertainty of dementia's trajectory: "knowing what's coming and not knowing how long you've got um is kind of scary you know. I wonder I mean would I be suicidal or something?" She acknowledged her mom's intermittent desire to die: "there's days my mom'll say 'I just want to die. I just want to die' … You know, and I just try to encourage her. And and I wonder how, what I'll feel like" [24964, F, 58]. Two other participants acknowledged the difficulties of ADRD and anticipated they would not consider ending their lives. For example, one person stated, "And I don't consider suicide... I'm sure some people do" [58750, F, 75]. Referencing potential strain on caregivers, one woman noted, "I would hate that … on the other hand I mean like I don't think I would kill myself or anything … to spare somebody that" [43934, F, 69].

Anticipated suicidal Ideation
Seven participants (14.0%) anticipated the desire to end their lives if they were diagnosed with ADRD. See Table 2 for basic participant characteristics. One respondent bluntly noted a preference for death by suicide if diagnosed: "So how do I feel about dementia and Alzheimer's? Do you wanna know that? … I'd rather commit suicide." [61894, F, 75]. Another participant stated: "There's nothing that would cause me to kill myself except dementia" [21389, F, 63]. Slightly more specific, one person indicated that he had shared his anticipated response to dementia with others: "I've told everybody, you leave a revolver where I can find it 'cause I ain't gonna stay around for this" [75016, M, 60]. In considering potential reasons why some people anticipate wanting to end their lives if diagnosed with dementia, three subthemes emerged. Another participant expressed concern that others would worry about him, even though he also referenced being alone: DI = Anticipated death ideation if diagnosed with ADRD; SI = Anticipated suicidal ideation if diagnosed with ADRD; Both = Anticipated death and suicidal ideation if diagnosed with ADRD a Here, a "yes" response indicates the person has a first-degree relative diagnosed with Alzheimer's disease or another type of dementia. A "no" response indicates the individual reported non-genetic exposure, which could include a non-genetic relative diagnosed with ADRD, a friend diagnosed with ADRD, serving (or having served) as a caregiver for someone with ADRD, knowing a caregiver for someone with ADRD, or having worked with people diagnosed with ADRD. b Participant 23653 did not respond to this item.
"I mean, like I said, I'm alone, and if I could end it before anybody has to worry worry about me, but I have so many loose ends right now, it'd be a bad thing for me to happen. Either me physically or mentally going away" [75016, M, 60].
Both of these individuals indicated the need to prepare, or get "affairs in order," perhaps as a way to reduce burden.
Devaluation of Life/Self with Dementia. Several comments reflected assumptions about devaluation of one's life and sense of self if living with dementia, underlying anticipated suicidal ideation. One individual attributed her anticipated desire for suicide to lacking awareness or "being a blob," stating: "I don't know if I should say this but I have a plan that if I do start to have symptoms that I'll-and it's starting to get worse, I'll take myself out … I will commit suicide uh and I'm okay with that… I don't want to be lingering around or whatever being a blob that doesn't even know what's happening" [21389, F, 63] Another participant expressed the desire to end her life based on presumed lack of conscious awareness and increased need for personal care; she also referenced physician-assisted suicide, but acknowledged that it may not be available for cases of dementia: "I do not want to be someplace where I don't know who I am, where I am. And physically, the thought of some…people bathing me and changing my diaper and all that kind of stuff. No way. No how. I don't want to be taken care of. I don't want to live in one of … in in that kind of of a state of… And I'll plan ahead of time you know. And I'll probably have to do it illegally, even though Colorado passed the law, but you have to be, the way I understand, you have to go be in a position where you're going to die within six months. And who knows how long you're gonna lay there with Alzheimer's" [61894, F, 75] In a broader reference to devaluation of life among others with dementia, this same respondent also stated: Because nobody comes back from it and that's the worst thing. I think, this is a horrible thing to say, but I think when somebody gets real bad like that, we should just put them to sleep like we do our cats and dogs [61894, F, 75] Desire for Control. The loss of control and desire for control over one's life were also observed among individuals anticipating suicidal ideation in response to a dementia diagnosis. Another participant expressed the challenges related to control if she were to take her life based on having dementia: "...then my concern there is I don't want to take myself out too soon, but I don't want to have it wait so long that then I forget to do it." [21389, F, 63] Referring to the extreme deterioration of dementia, one individual described it as unacceptable: Eventually, unless something happens to put it back in the problem category uhm it will destroy my brain,

Anticipated Death Ideation
Fourteen participants (28.0%) anticipated a passive wish for death, referred here as anticipated death ideation. See Table 2 for basic participant characteristics. There were basic statements expressing the anticipation of wishing to die rather than live with dementia. For example, "you know it's hard to say, but … if it gets to at [sic] that point you'd kind of want things to be over with if you could … I wouldn't say you know I wouldn't be for um euthanasia anything at that point but uh you know you'd just hope it was a quicker end rather than a lingering end." [53136, M, 65] Another individual expressed the hope that he would be able to "quit" if he were diagnosed with dementia, explaining: "Yeah, quit, quit uh would be to me to just sort of say: alright, let's get this over with this, I'm ready to go. Um, I'm prepared to die. I'm not volunteering, but I'm prepared to." [86847, M, 72]. As observed with anticipated suicidal ideation, similar subthemes emerged illustrating reasons why some respondents anticipated a preference for death over life with dementia.
Concern about Being a Burden. People who anticipated a wish to die (without active intentions) in response to a potential diagnosis of ADRD were also concerned about the impact dementia has on others and potential to become a burden to loved ones. One individual worried that he would "be one of those who gets angry… and that would be hard on my wife…. that I'll live too long and deplete the financial resources, and by doing that, then I'm not taking care of my wife." [86847, M, 72].
Another person voiced concerns about being a burden and stated the desire to avoid a long, drawnout death: "I'd rather just be dead… I mean I really don't want to live with it. Because to me it's not quality living and you're just-to me it's a burden to others, it would be a b-b-burden to other people, my family and stuff and I wouldn't want to do it. I'd rather have an accident orrr fall asleep and not wake up or something." [23653, F, 78] One participant identified the conflicting feelings of loss and relief associated with his grandmother's death after years of extensive care and noted the desire to avoid burdening his own family: "I've heard a lot of people say I-I-I want to live as long as I'm not a burden on anybody th-that's the last thing I want to be… I guess my grandmother may fall into this category but uhm somebody had to take care of them for the last several years of their lives so when their death came it was as much of a relief as it was a-a-a sad occasion...I would hope to not be in that position for my kids and grandkids … I-I just don't want them to have to carry me" [20585, M, 68] Devaluation of Life/Self with Dementia. For some, the anticipated wish to die if diagnosed with dementia related to perceived devaluation of life. In a stark example, one man described life with dementia in very basic terms: "you're really gone with dementia do you even know what's happening? Or is it just your, your physical system is reacting and you really have no rationality and you're not really co-conscious of what's going on and you're just waiting to die I guess… God." [21803, M, 76] One woman anticipated a negative impact on relationships that would seriously undermine her quality of life and desire to live: Desire for Control. The subtheme of control for anticipated death ideation was somewhat focused on the preference to avoid hospitalization or institutionalization. For example, one person expressed the desire to control the place where he died: "I-I more or less just hope to die, not in a hospital, just on you know some-It seems like a lot of people that I've known have just died. It's not like they were in the hospital for a long time or… I'm just hoping to die." [26464, M, 69] Another person linked institutionalization for dementia with a lack of control over where and how one lives, stating the belief he would prefer death to living this way and reflecting a desire for control as well as devaluation of life lived without control: "I figure that if you can't live where you want and how you want, why bother taking another breath? If they are going to put you in an institution where you're not going to be happy and especially if you have a limited amount of time to spend, then it makes no sense at all for you to stay there. So the whole idea of being institutionalized, I would rather die on the street corner." [93932, M, 69] In another comment about nursing homes, the lack of independence contributed to anticipated preference for death; however, this participant also acknowledged that as the disease progressed, she may be more accepting of such an outcome: "I do want to stay independent and I don't want to end up in a nursing home. Like I said, I'd rather just pass away, but on the other hand, if I got to the point I, you know, I think I would be accepting of it." [23653, F, 78] Overlapping the desire for control with both concerns about burden and devaluation of self, one person described the desire to control how her children viewed her and avoid being seen in a vulnerable state, noting the difficulty of timing [also see 21389] when one dies: "I've always been competent, I've always been someone that I've wanted them [her adult children] to look up to, as far as my ability to take care of myself, and my ability to think and process, and … I wouldn't want them [her children] to see that. So, I don't know which is worse, I don't really wanna die prematurely, but on the other hand if you die before you get to that point then then at least it's not seeing the person who can't function and I don't wanna get to that place" [28130, F, 66] Quantitative Analyses To create two groups relatively equal in size for quantitative analyses, participants who anticipated suicidal and death ideation were combined, and participants who did not mention suicidal or death ideation, questioned whether they would be suicidal, and anticipated they would not be suicidal were combined. The resulting groups represented those who anticipated suicidal or death ideation following a hypothetical ADRD diagnosis (n = 21) and those who did not (n = 29). Chi-square indicated that anticipated suicidal or death ideation was not dependent on gender or having a firstdegree relative with ADRD. ANOVA determined the groups did not differ in their reported dementia-related anxiety, self-perceived ADRD risk, self-perceived health, knowledge about AD, religiosity, or age. See Table 3.

Discussion
The present work examined attitudes and feelings about ADRD among adults without dementia diagnoses and revealed that in response to a hypothetical future dementia diagnosis, seven individuals (14.0%) anticipated suicidal behavior and 14 individuals (28.0%) anticipated a preference for death over living with dementia. Three subthemes emerged in comments reflecting both anticipated suicidal and death ideation. Some individuals cited concerns about burdening others with increasing care needs, as dementia progressed and noted concerns about how their declining cognitive status would affect their relationships. Some responses included dehumanizing language, which appeared to reflect devaluation of a life with dementia and diminished perception of self. Other respondents anticipated decreased independence and control, sometimes referencing institutionalization as a feared option. The freedom to make choices surfaced in terms of living situation as well as mentions of physician-suicide as a valued option to consider. Previous quantitative work revealed that adults with suicidal ideation also reported higher dementia-related anxiety (Cui et al., 2020), and the present qualitative findings support the link between dementia and anticipated suicidal ideation for some individuals. Participants in the present study were community-dwelling adults without dementia diagnoses. Dementia is a feared diagnosis, and the current sample was familiar with the trajectory of ADRD, with 60.0% of participants reporting having a first-degree relative with ADRD. Despite this familiarity, it is unclear if these individuals accurately predicted their responses to a dementia diagnosis. Affective forecasting errors, in which people overestimate the intensity and duration of emotional reactions provoked by future events, are common (Wilson & Gilbert, 2005) and apply in health situations. People overestimate the negative impact of both predictive genetic testing prior to diagnosis (e.g., predisposition to cancer) and actual diagnoses (e.g., diabetes, kidney disease) on their quality of life (for an overview, see Peters et al., 2014). There are no known studies of affective forecasting related to future dementia diagnoses; however, if a similar pattern holds, one may hypothesize overestimations of emotional reactions, including anticipated suicidal or death ideation, to a dementia diagnosis.
There may be errors in predicting one's reaction to a dementia diagnosis, yet attention to potential for suicidal ideation and behavior is warranted. Suicide risk is elevated in the early stages of ADRD (Erlangsen et al., 2008), when diagnosed prior to age 65 (Alothman et al., 2022), and in the first 90 days after diagnosis (Alothman et al., 2022;Schmutte et al., 2022). Existing psychiatric diagnoses combined with ADRD also appear to increase risk for suicidal ideation and related behavior (Alothman et al., 2022;Choi et al., 2021;Lai et al., 2018). Risk for self-harm among people living with dementia is important in the context of the pervasiveness of both dementia and suicide. In 2020, Alzheimer's disease and suicide were the 7 th and 11th leading causes of death in the U.S., respectively (Ahmad & Anderson, 2021), and prior to the coronavirus pandemic, they were sixth and 10th leading causes of death in the U.S. (Alzheimer's Association, 2021;Drapeau & McIntosh, 2020). Because ADRD risk increases with age (Alzheimer's Association, 2021) and rates of death by suicide among older adults are disproportionately high (Drapeau & McIntosh, 2020), understanding The present finding that 42.0% of adults without a current dementia diagnosis anticipated the active or passive wish to hasten death in response to a hypothetical dementia diagnosis helps to understand providers' concerns about patient reactions. Some providers cite concerns about the emotional stability and reactions of their patients as reasons for their reluctance to diagnose dementia (Abe et al., 2019;Tarek et al., 2009) or decision to withhold the diagnosis (Vassilas & Donaldson, 1998). However, in research settings, most participants do not experience significant psychological consequences as result of their diagnosis (Carpenter et al., 2008) or test results indicating genetic risk (Galluzzi et al., 2022). Regardless of their potential emotional reactions to diagnosis, ethical guidelines are unanimous in the position that patients are entitled to full diagnostic disclosure. Providing support services (or appropriate referrals) as part of the diagnostic process may reduce providers' anxiety, in addition to providing comprehensive care to people living with dementia and their families.
In examining the subthemes reflected by participants' statements of anticipated suicidal ideation and/or death ideation, we detected concerns about becoming a burden, the devaluation of life/self with dementia, and the desire for control. We note the overlap of our subthemes with concepts from the interpersonal theory of suicide (Van Orden et al., 2010), which suggests that the combination of perceived burdensomeness and thwarted belongingness contribute to the desire for suicide. It may be that participants anticipate that functional declines associated with dementia result in becoming a burden to others and therefore question whether people in their lives would be better off without the individual living with dementia. Advancing dementia may also interfere with anticipated ability to live meaningfully and maintain a sense of belonging and connectedness with others. As noted previously, social support was the only variable differentiating respondents who did and did not anticipate considering suicide if genetic testing revealed they were at high risk for dementia; those who anticipated suicidal reactions to high dementia risk reported lower perceived social connectedness (Caselli et al., 2015). The present study did not assess perceived social support to determine if a similar relationship held. Forthcoming studies in this topic area would benefit from assessing social support, social isolation, and perceived burdensomeness to determine their association with anticipated suicidal or death ideation.

Limitations and Future Directions
We consider the study's limitations within the context of future directions for this research topic. First, the sample is predominantly White and female, and the average years of education are the equivalent of a college education. It therefore is unclear whether a more diverse sample would report anticipated suicidal and death ideation at similar frequency and with similar subthemes. Future studies would benefit from inclusion of more diverse samples to increase the generalizability of the present findings.
Second, the study relies on anticipated responses to an imagined dementia diagnosis. The findings may be prone to affective forecasting errors. Given the frequency and intensity of some responses combined with the high rates of suicide among older adults particularly men (Drapeau & McIntosh, 2020), we suggest that the risk for suicidal ideation and behavior requires further investigation. Future studies may include individuals recently diagnosed with MCI, which is a known risk factor for future dementia diagnoses.
Relevant to this point, a third weakness includes our inability to comment specifically on the cognitive status of our participants except to say that none had been diagnosed with ADRD. Of 50 participants, 25 took part in the Memory Clinic screening, suggesting interest in and/or concern about their cognitive status. Although none were flagged with significant cognitive impairment, it is possible that some may have been in early stages of MCI or dementia that were undetected by the screening process. Future studies with individuals recently diagnosed with MCI will provide important information about responses to a hypothetical diagnosis of dementia and whether this population also anticipates suicidal or death ideation in such a situation.
Lastly, although the sample size was more than adequate for typical qualitative analyses, it may not be adequate to detect group differences with traditional quantitative analyses. ANOVA and chisquare tests appear to indicate that people who do and do not anticipate suicidal and death ideation in response to a dementia diagnosis do not differ in terms of self-reported anxiety, self-perceived risk, stigma, and knowledge about dementia, nor did they differ in self-perceived health, age, years of education, religiosity, gender, relationship status, and presence of first degree relatives with ADRD. Caselli and colleagues (2015) also reported few differences between those who do and do not anticipate suicidal ideation in response to a dementia diagnosis, with the exception of social support.

Conclusions
In spite of these limitations, we note the relevance of the findings for the potential intersection of two public health crises: ADRD and suicide. Merely imagining a dementia diagnosis resulted in anticipated suicidal and death ideation among a number of our participants, raising significant concerns about reactions to actual diagnoses. In dementia's early stages, individuals may be accurately aware of the decline they will experience and maintain the independence to take action on their thoughts, which may represent a point of greater suicide risk. In dementia's later stages, individuals may experience cognitive changes that undermine awareness of the difficulties they are experiencing, thus reducing motivation to take one's life and overall suicide risk. The complexity of this situation was reflected in one participant's concern about timing their suicide: "I don't want to take myself out too soon, but I don't want to have it wait so long that then I forget to do it" [21389, F, 63]. The reasons cited for anticipating suicidal or death ideation in response to an imagined dementia diagnosis included concerns about being a burden to others as the dementia progressed, the devaluation of life as compromised by dementia, and the desire for control, which may be undermined in later stages of dementia. In considering the diagnostic process and best patient care, providers may want to develop skills in attending to the emotional reaction to ADRD diagnoses, including assessment of suicidal ideation and behavior. Providers with time limitations or reluctance to engage in such assessments may want to consider ways to incorporate support services or referrals for support services to address patient concerns about how dementia impacts daily life, relationships, and connectedness. Indeed, providers are encouraged to pay special attention to the well-being of patients living with dementia who also have known risk factors for suicide, including early onset dementia (diagnosis prior to age 65; Alothman et al., 2022), preexisting psychiatric diagnoses (Choi et al., 2021), and a frontotemporal dementia diagnosis (Alipour-Haris et al., 2022;Lai et al., 2018;Schmutte et al., 2022), particularly during the period of greatest apparent risk: the first 90 days following a dementia diagnosis (Alothman et al., 2022;Schmutte et al., 2022). and thoughtful contributions, which have improved our understanding of and approach to investigating these important topics.

Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by a grant from the Colorado Springs organization, Angels Against Alzheimer's. The first author's time was supported by a grant from the National Institute on Aging (AG052820).

Ethical Approval
Study methods and protocols were reviewed and approved by the University of Colorado Colorado Springs Institutional Review board for the Protection of Human Subjects (#19-001) and the ASU Institutional Review Board (STUDY00011362). Informed consent was obtained from all participants, and all methods were carried out in accordance with relevant guidelines and regulations.